The Active Patient: Faces Of Change

Anyone who's done battle with a bureaucracy knows that the most difficult ear to speak into is the one that's connected to a mouth with the power to say yes or no. Voices in favor of change, no matter how loud and compelling, can easily be drowned in a symphony of established structures, not to mention competing interests and conflicting policies. Advocacy of any sort can be a daunting task, but when the advocate is a patient, and the issue is his life, then "Silence = Death," as ACT UP said during the AIDS epidemic.

But the growing patient advocacy movement, in the US and globally, isn't just about getting access to new, potentially life-saving drugs. And the methods for improving patients' quality of life, their interaction with clinicians – and ultimately their health outcomes – aren't limited to picket line protests, underground clinical trials and public figures burnt in effigy. Access remains vitally important, but it's one among many issues kindled by patients who want to live well, in spite of illness.

Patients with certain kinds of dementia, for example, can suffer just as badly from a wrong diagnosis as from the lack of access to therapy. Cancer patients need answers to questions specific to their own individual lives that often go unanswered. Policies that make it difficult for otherwise appropriate patients to participate in clinical trials need to be legislated. Patients spread across geographies must bridge time and space to meet in solidarity, and to push their causes past the doorstep and onto the dinner table of the decision-makers, wherever those deciders dine.